When a sister has to donate a gift of life

Last week The Observer launched a campaign for a revolution in organ donations to transform a system that each day sees three Britons die waiting for a transplant. Your responses showed how desperate the plight of sufferers can be. Here we reveal how Fatemeh Jabbari had to donate her kidney so her sister could enjoy a life free from dialysis - and we report how fresh hope, and a new life, can be given to thousands of others

Very little can be seen of Fatemeh Jabbari. Apart from one napkin-sized square of skin, her body is swathed in a blue cotton sheet as she lies on her side in an operating theatre. With painstaking care, the surgeon is cutting into her left side to remove a kidney that will be transplanted into her sister, Sedigheh Jabbari, who is nervously sitting up in bed just a few rooms away.

Using intricate instruments, the surgical team led by Professor Nadey Hakim cuts away all the tissue that holds the kidney in its capsule. As the surgeon looks inside the body, with his registrar holding back the two sides of skin, what he sees is a cave-like hole, with the dark purple organ moving inside, surrounded by its veins and fluid.

But the kidney doesn't want to come out and is stubbornly sticking in there, as it turns out to have extra veins.

'This is hard, she has a complex anatomy,' explains Hakim. 'And it is dangerous, because you have to be sure that you are not cutting into any veins.'

There are lots of official words for removing an organ - harvesting, retrieving, procuring - but none that conveys the sense of wonder of it all. At times it seems as if Hakim is excavating deep into the body, bypassing the crucial veins that cannot be cut, in order to find the one precious thing that no one else can give him: a healthy organ.

And he has to extract it because, if he fails, then Sedigheh will not have long to live. Both of her own kidneys have failed, and the dialysis that sustains her cannot last for ever.

Finally, the kidney is freed and put into a metal dish, surrounded by bodily perfusion fluid. A jugful of saline is poured into the cavity to flush out her insides. Fatemeh is neatly stitched up, the room is scrubbed down, and the patient is slowly brought round.

At the same time, Sedigheh has been wheeled in to the preparation room to be anaesthetised. 'I'm scared,' she whispers, before she goes into a deep anaesthetised sleep. The 52-year-old woman, who was so chirpy on the transplant unit the day before, is now facing the moment that she had hoped would happen for more than a year.

The transplant is successful, and the two sisters, born in Iran and now living in central London, can recover together, side by side. This procedure is one of around 100 live donor transplants that will take place at the Hammersmith Hospital this year, removing 100 kidney patients from the ever-growing national organ waiting list.

The great sadness is that, for most patients, this kind of procedure will never become a possibility. There are more than 8,000 on the waiting list for a kidney, and the vast majority will not be able to find a relative who is the right match, or who is willing to go through such a serious operation. Nor will they be lucky enough to receive a donor organ from someone who has died.

Hakim, surgical director of the Hammersmith's transplantation unit, says: 'It is wonderful that two sisters can do this for each other. Such operations bring people very close together, it is a bond that can't be broken. I wish we could offer it to everyone who comes here.'

His colleague Sharon Walker, a counsellor on the renal unit, agrees. 'What I find personally hard is that sometimes there are patients who have been coming for dialysis for years, and then one day they see someone new wheeled in, and all the family is excited around them because their brother or sister is going to donate a kidney - and the other patients know that will never be possible for them.'

For Hakim and other surgeons, live donation is one of the very, very few ways they have of cutting the waiting lists. But it has been born of the desperation over the shortages of available organs.

'It is a cruel world,' said Hakim. 'There are so many people whom we could save - we have all the ability to do it - if the system were a little different. I think a lot of people would be happy to donate their organs when they have died. You can't take them with you to heaven, after all. And I've seen patients with new organs have a wonderful life. If only everyone could see the transformations we see here.'

Perhaps the person most wanting that miracle is Anis, the 16-year-old daughter of Sedigheh, who has seen her mother's life deteriorate so badly over the past eight years.

When asked what she is most looking forward to when her mother becomes healthy again, Anis says, without any hesitation: 'Travel, travel, travel. We haven't been able to go anywhere because she has dialysis every other day, and often she is sick. We will never stop travelling once she is well.'

'It is one of the most powerful moments of human generosity,' says Dr Braulio de la Calle, 'when a family has just learnt that their loved one has died, and they agree to donate their organs to save the life of a person they do not know.'

De la Calle is a surgeon in the intensive care unit at the Gregorio Marañón hospital in Madrid and part of the nationwide network of doctors that co-ordinates organ donations in Spain.

Part of his work is dedicated to identifying the potential donors and talking to the bereaved families about the possibility of donating the organs of their deceased relatives.

It is this network of highly trained, dedicated professionals that has made Spain the world leader in organ donations - and to which Britain now looks as it considers changing to a new opt-out system. In 2007 there were 1,550 donors, or 34.3 per million people, in Spain, three times the rate of the United Kingdom. This allowed Spain to carry out 3,829 transplants altogether.

Although the law in Spain presumes consent, in practice doctors never remove organs without the explicit approval of a relative. Each hospital has its own team of co-ordinators, who work alongside the other doctors to ensure that the family fully understands that their own sad loss can provide hope for someone else.

'Some cases stay with you for ever,' De la Calle says. A few years ago a young family of four had been involved in a car accident, in which the two children died. Their parents had survived, but were themselves seriously hurt, and were being treated in hospital. It fell to De la Calle to ask their permission to remove their children's organs.

'It is the hardest part of our job,' he says, 'especially when you are dealing with totally unexpected deaths when the families are living through a truly tragic situation.' It was extraordinary that the parents were even prepared to listen to him, he thinks, but the fact that they so readily agreed to his request left a permanent mark on the doctor.

Dr Rafael Matesanz, director of the National Organisation of Transplants, ensures that the whole system runs smoothly. He is concerned that the debate in Britain has concentrated too much on the law of presumed consent and not on how the system functions in reality.

Spain does not lose potential donors in the first moments after their death because the co-ordinators are always on call. It is in the short window of opportunity after death that the co-ordinators step in to talk to the families.

One person who benefited from an organ transplant is Julián García, a sprightly 65-year-old from Madrid. In 1991 he underwent quadruple by-pass surgery. Then, a year and a half ago, he suffered a heart attack. García was kept on a life-support machine for 20 days, until a heart became available. The operation was a complete success.

Now almost fully recovered, García becomes emotional when he talks about his transplant doctors: 'They are like friends, with a sense of humanity you cannot imagine.'

He finds it even harder to express the gratitude that he feels towards the family that gave permission for the heart donation that saved his life, breaking down when he thinks of people he will never know. 'They tell you a little about the person, their age, whether they were a man or a woman, but they do not tell you their name. But we have prayed for that family.'

And he sees himself as so very lucky, just to be able to drive and travel, as Sedigheh Jabbari will doubtless be doing later this year. 'The first piece of good luck came when I was born, the second when I had the bypass, and the third when I was given a new heart.'

Even the small things, such as travelling on the metro or a trip down to the shops, mean more to him now.

The readers' stories

'Our child's organs helped a total of 54 patients'

Thank you for highlighting the plight of those waiting for new organs and for launching the campaign to change the law on donations.

Our beautiful daughter Kate died in 2002, aged 27, while waiting for a new heart. She had been diagnosed with heart muscle disease in 2000, just four months after her marriage. She had discussed with her husband and us what should happen to her if 'things go wrong during my transplant' because she wished to help others.

Sadly her transplant did not arrive in time but her wishes were carried out. Four days after her death, her husband received a letter indicating that up to 54 (yes, 54!) people had been helped by Kate, even though her major organs could not be used. Her heart valves, corneas, skin and other tissue all went to save lives or for life-enhancing operations. What a wonderful legacy!

We saw our Kate the night before her funeral and we can assure those who say, 'How could you bear to see your loved one cut about like that?' that she looked just as beautiful in death as in life. We shall never know the people that our daughter helped. What matters is that she has left a lasting legacy to others and that this has helped our family so much in our coming to terms with the death of our much-loved daughter.

We urge everyone to support your campaign.Cathy and Richard Spurgin Harleston, Norfolk

'Knowing Joanne's death helped others to live is a daily comfort'

My daughter Joanne, 23, who carried a donor card, was airlifted to Addenbrooke's Hospital in Cambridge after she was injured in a car crash in 1993.

My reaction when a policeman told me was: 'She is dead then. They want her organs.'

When I arrived at the hospital and kissed her forehead she was cold like stone, because she was being kept alive by a ventilator. I knew there was no hope.

I said to a doctor, 'I suppose you want to talk about her organs.' I think he was shocked by my directness but I knew that my precious girl had already left us.

Joanne donated her heart, liver, kidneys, skin, bone and eyes. We brought her home in the back of our camper van two days later and held a wake in our house. Several days afterwards we received a 'thank you' letter from the parents of the girl who received Joanne's heart. Later we had a letter from one of the kidney recipients, telling us what a different life she now had.

These acknowledgements meant so much, and I wish that some of the other recipients were able to do the same.

We are still in touch with the two that did write and I am so very grateful to them for that. The kidney recipient has had a son who would not have been born without the transplant, so another life has been created out of our loss. The pain of Joanne's death is with us every day but knowing that others have been given life is a comfort.Barbara Bradley Hemel Hempstead, Hertfordshire

'My husband died but many more patients could survive. Keep it up'

I'm very impressed with the launch of The Observer's campaign. My father died 10 years ago and might have been saved by a liver transplant. I emphasise the 'might' - transplants fail, he had viral hepatitis, he was 59, but still, an available liver would have given him a chance of some extra life. He was at the top of a waiting list for a transplant at King's College Hospital in London and then, as no liver arrived, he got worse, contracted MRSA and died. It could have been different.

I have always carried my donor card with a bit of pride: it seems an easy enough way to give something valuable to others, and I don't really know why more people don't do it. Many of us think that we're never going to be in the unpleasant position of needing new organs, but looked at pragmatically, a system of 'opting out' (assuming not too many opt out) would benefit us all. I look forward to more hard-hitting articles on this subject. It's too important and too heartbreaking to ignore any longer.Claire Loveday London N8